ABC’s of Fall 2017

Yeah, Yeah, Yeah I know it’s been awhile. September – November have seemed to fly by. I mean we are only a few days till December. Seriously?  I don’t like it one bit. I want to hold on to every minute but they just slip out of my hands as fast as I catch them. Our time lately has been filled with Advocacy, Being Grateful, and Cruising for a little get-a-away.

Advocacy

Being handed a crappy situation can either make you go inward to deal with things in your own way and on your own time or makes you so damn mad you push things outward, kicking and screaming for someone to hear you. Guess which way we went…

Advocacy means so many things. For us, we are constantly advocating for the Big He and other disabled veterans with ALS with regard to the VA for services and equipment. Recently we were denied a program that would place someone in our home to help the Big He with making lunch and being there when he eats due to choking concerns. With one program, the VA did not even submit a referral for a particular homemaker/caregiver program. Keep in mind, I am lumping these scenarios as “The VA” but in truth, it is the individuals we are working with. For the most part, once you get to a decision-making level, individuals seem to make better decisions regarding how to handle situations. One of the most frustrating part with working with some at the VA is the inability to identify solutions be it other programs or even suggesting taking it to management to get their input.  I have heard some refer to this as the difference between old VA and new VA. It’s a culture of status quo or a “that’s not my job” attitude. At a time when the VA is getting hammered for so many things, you would think that management would be encouraging solution oriented approaches. I have also observed that the old VA approach to things is intimidation with requests. Questioning some at the VA regarding how decisions are made are not met kindly. Lucky for us, the Big He and I have both been government employee’s and that way of thinking does not phase us. We clearly understand the hierarchy in government offices and how to get resolution to our problems. We also understand that most of the time you need to take a bottom up approach but there are those times that dictate a top down approach. Needless to say getting denied did not go over very well with me especially when the VA uses portions of their policy to deny us but leave out the portions that would apply. I am happy to report that after a meeting with decision making individuals at our VA, there was a solution to our problem and the Big He will be getting someone to help him with lunch time routine to begin with.

Advocacy for us has also has been raising awareness for Alpha Lima Sierra. We do this constantly. There are many people that are unaware of what ALS really is or that there is a veteran connection.  In early November, we took part in our 2nd ALS Association Walk. We had a great time and had about 20 walkers with us. Even our new family addition, Lou, got in on the advocacy by raising money for the cause. He did great and raised over $1000.00

Being Grateful

I will be honest, at times it’s hard to see things through the eyes of gratitude. We are so consumed with this ALS life that taking a step back is hard. I try every night to be thankful for my many blessings. This includes trying to find something to be thankful for in an ALS world. I am grateful that we are meeting so many amazing people in this journey. I am grateful that the Big He can still talk and say “I love you” as well as he can still walk (short distances). I am very grateful we have someone in our life now that is helping us. She will be the Big He’s caregiver while I am at work.

Cruising

We did a Thanksgiving Cruise with the Big He’s Dad, Stepmom, Sisters, the one Brother-in-law and their kids. We have done several cruises but this one the Big He was more limited to what he could do. It was hard for me to see this and I can only imagine what it was like for him. We had a great time but it did open our eyes to limitations that disabled people deal with daily. Traveling takes a lot more thought then it once did. We figured things out and had people to help along the way. There were new friends that would help secure an empty elevator for us, or move people out of the way so Frank the Tank could get through. Yes, we took the tank wheelchair and it was a hit. That alone helped us do some advocating for The Independence Fund and Carlson Mobility and how they help disabled veterans of all era’s. There was also the chance to bring up ALS and its impact. If we educated one person or made them more aware, that makes me happy, that is another thing to be grateful for; being able to communicate to others what ALS is and what it does to people and their loved ones.

I think that pretty much covers what we have been up to lately.

All my love,

The She

The Big He’s update: He is about to start his 4th cycle of Edarvone which was shown to slow the progression by 30%. Can we see a difference? Not really. ALS does not progress in a linear way. It can be fast, slow or even pause for a bit, but it’s always moving forward, always progressing. The Big He’s speech is really starting to be impacted. While he can still talk, he does get tired and you can detect some slurring. He is still eating like a champ and not needing his feeding tube/button. Walking poops him out so it’s a common thing now for him to be in his chair when we are out and about. Please continue to keep him in your prayers and that this disease halts long enough for us to see a cure in the Big He’s lifetime.

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Whisky Tango Foxtrot!

Yep, that’s right, WTF! That was really our first thoughts and I think I may have actually said it, when carpel tunnel syndrome turned out to be Alpha Lima Sierra. We are walking around in this fog of disbelief, grief, and anger. Oh, throw in confusion too. We have been trying to wrap our minds around what Alpha Lima Sierra means to our family, our marriage, our life. We know what the disease is, what it will do but what does it mean for us.

It means our world has once again been knocked off its axis. When we experienced the loss of our twin daughters in 2000 and the loss of first son in 2001 our world tilted. It is now even more catawampus. We know the grief path and know how hard it is.  We will have to learn to live in this new world of ours. Which right now is kinda hard. I know we will figure this out. Our goal is to LIVE and ENJOY the time we have as a family.

It means in our new world we will find love and laughter in the small things (and most likely the inappropriate things) and will find them daily. That’s just how we have always rolled. I have noticed the minutes we are together are more precious and the time apart is so hard. Let’s face it, Alpha Lima Sierra is the kind of disease that you know when the moment has gone it has gone. No do overs. So why waste a moment. Our family has always been the most important thing, but now we show this by our actions and not just our words. We don’t let the day to day crap take us from what is important. We see this in our little he as well. He has always been a caring kid, but now he takes time to send us sweet text messages like “I love you” instead of the “Can I get on Xbox now?”.

It means in our new world our walk with God has strengthened in ways we could not have imagined before. For our whole family. Knowing God is us watching over us, Jesus is walking beside us and the Holy Spirit is within us keeping the darkness away gives our family the peace we need to face this. We know we are not alone in this because He is with us. Now, let me just put it out there, we are scared and we do ask why and how can this be. But it is in the same breath we ask for His comfort and peace.

It means in our new world we are focused on doing all those things we have dreamed of doing and making all the memories we can NOW. We are not just thinking of bucket list items we fully plan on crossing them off. Trey is adding to the list as well. There is no more “when we retire” or “when our son is in college”. We are doing now.

So what does all  this mean to us. It means we are going to LIVE and ENJOY life NOW.